Welcome to ‘Run Your Own Race,’ a New Sarcoidosis Column

Calvin Harris avatar

by Calvin Harris |

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Hello, and welcome to my column, “Run Your Own Race.” I am honored and excited to bring my thoughts to life. Considering this is my first column, I thought it might be best to introduce myself.

I am Calvin Harris, and depending on your age (and musical tastes), you might find my name rather amusing. There is a famous DJ and music producer who took my real name as his pseudonym. No worries, though, I really do like his music.

I am a sarcoidosis patient, or survivor, or warrior, or fighter, depending on the day. I was diagnosed back in 2014, though I noticed the symptoms well before. My version of sarcoidosis involves the lungs, skin, and lymph nodes, with a few other areas still under evaluation.

Like so many other sarcoidosis warriors, I take a lot of medicine, get a lot of scans, and see a lot of doctors. I am currently writing this column while receiving my monthly infusion of what used to be infliximab, until I was switched to another medicine that’s supposedly equally effective. That process alone deserves more discussion, but let’s stay with the introduction for now.

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I live in Brooklyn, New York, but home is Maryland. I grew up in the Maryland suburbs of Washington, D.C., and until two years ago, had spent my entire life as a Marylander. That said, I came to New York City for an amazing career move and have not regretted uprooting my life. Of course, as a sarcoidosis warrior, any type of move can dramatically affect the quality of your care, but I have an amazing medical support system around me.

While in Maryland, I was accepted into the Johns Hopkins Sarcoidosis Clinic and was treated there for about five years. Hopkins is one of the best hospitals in the world and seems to host one of the few clinics specifically dedicated to my condition. So although I live in Brooklyn, I remain a patient of that clinic. I did have to switch all of my other healthcare providers (a number somewhere in the double digits), but my great doctor at Hopkins plays a key role in my care.

I am a certified public accountant and chief financial officer for the National Urban League, a historic civil rights and economic empowerment organization that has existed for over 110 years. I strongly believe that each of us has something to give to the world, and it is important to help others, with gratitude. Working at a nonprofit, especially this one, allows me the unique honor and pleasure of knowing that my work, by design, helps others.

If you look at my social media, especially on Instagram or Facebook, you will see an odd jumble of exercise, sarcoidosis-related care, social justice, and just plain silliness. And all of those are me. I am a whole person, full of flaws, yet always attempting to do good in the world.

I am an athlete. Funnily enough, this is the first time I have ever typed or uttered those words. I have been an active person for most of my life, yet I oddly became far more active and consistent after being diagnosed. My Hopkins doctors had emphasized the importance of movement, and I took it to heart.

I run my own race. I have run three half-marathons, the first races of my life, after turning 50 and receiving a sarcoidosis diagnosis. I am quite slow, compared with where I would like to be, but I give myself the grace of acceptance. I don’t like that my lungs sometimes hold me back from going as fast or hard as I would like, but I accept it.

More importantly, I remind myself that even if I participate in a timed race, my only real competition is me.

Simply attempting to run, walk, or move at all when you have sarcoidosis can be a challenge. Heck, sometimes it feels impossible. And I have had this awful condition long enough to know that my version of sarcoidosis is easier to manage than some, and tougher to manage than others, and that is OK. I need to accept that for peace of mind.

For me, every step is a victory. After all, sarcoidosis can change over time — I know that my version has. Yet, I am so grateful that it hasn’t stopped me from moving. I am very grateful that I can run my own race.

So, that’s a snapshot of me. Let’s run this race together.

***

Note: Sarcoidosis News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Sarcoidosis News or its parent company, BioNews, and are intended to spark discussion about issues pertaining to sarcoidosis.

Comments

Elizabeth Beavers avatar

Elizabeth Beavers

I enjoyed this honest and uplifting column very much. I live in North Georgia and I am 60 yrs. old. After about 3 weeks of having scans, ending with a pet scan that appeared I had Lymphoma in ever part of my body, even the spine and both femurs and a large tumor at the base of my tongue, live, spleen and lungs. My doctor moved quickly to get me in to see an oncologist. Now, today, Thursday August 5, 2021, after blood work and biopsies, I was told that I do not have Cancer but Sarcoidosis. I'm reading all I can find but it really does confuse me at times. My Oncologist set me up an appointment with a Rhuematoligist so I haven't seen her yet and haven't begun to discuss any type of treatment plan yet. I'm very nervous about the diagnosis and what it will mean for my quality of life but right now, I'm just so happy for a diagnosis since I've felt bad for so long. So again, Thank-you Calvin Harris for this very uplifting and encouraging column.
Sincerely, Elizabeth Beavers

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Calvin Harris avatar

Calvin Harris

Thank YOU Elizabeth. I too felt so much better (at least mentally) once I had a solid diagnosis. It's definitely not easy, but I am so happy to hear that you feel encouraged. Sometimes, every little bit helps! - CH

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Betsy avatar

Betsy

Thanks for the first column and looking forward to more!

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Calvin Harris avatar

Calvin Harris

Thanks so much, Betsy! I'm looking forward to it too! - CH

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Jeffrey Chance Feggins avatar

Jeffrey Chance Feggins

I truly appreciate your openness and down to earth Medical Information. .I wish other people would humble themselves regarding there Medical challenges in life. Everything ain't fine with everybody and that's a fact. Always take care of your body.

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Calvin Harris avatar

Calvin Harris

Thank you, Jeffrey. Always take care of your body! Well said!

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Jane C Krebs avatar

Jane C Krebs

I was interested in Elizabeth Beavers' experience. About a year after my stage 4 non-Hodgkin's lymphoma was determined to be in remission a new scan appeared to show it had returned all over, my scan looked "like a Christmas tree." It took a while to determine that these were not malignant cancer tumors but rather Sarcoidosis granules. Under the circumstances I was so relieved. I don't enjoy it and it has done damage to my heart and a a parathyroid gland which ran amok had to be removed. It took almost ten years of prednisone to reduce the inflammation in my heart but on the whole I have done. I realize that only because I was being scanned for the return of NHL was the Sarcadodis discovered so early, -rather than die suddenly of heart failure and have the sarcoids discovered during an autopsy as happned to so many people -and I am so fortunate to live near Albany (NY) Medical Center where incomparable Dr. Marc Judson practices. (Look him up on Google). Looking forward to the column and comments; we are a rare group and it's nice to hear about others' experiences

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Calvin Harris avatar

Calvin Harris

Thanks so much, Jane. True enough, it is important for us to find good medical care. -CH

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michael meninger avatar

michael meninger

Thank you.

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Christina Greutink avatar

Christina Greutink

I enjoyed and look forward to the next column! My sarcoid sneaked into my heart musculature over this last year during which I was taking Plaquenil; now I am taking prednisone, methotrexate, and folic acid in addition … upcoming is an EP study. Again, thanks and I look forward to your next column!!

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Linda Violante avatar

Linda Violante

I have Sarcoidosis in my lungs. For a week now I have been in the hospital and it was just confirmed after all the scans, including a heart MRI, I have Sarcoidosis in my heart. The doctor came in to tell me what was confirmed. The inflammation is going to be treated by steroids and I will have various medications during the next 3 months. This was hard to accept and even though I knew this was a possibility it was hard to accept. Is there anyone else out there that has Sarcoidosis in their heart?

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